This Is MS Multiple Sclerosis Community: Knowledge & Support

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We are writing to you today to request that your government provide $10 million for research into Multiple Sclerosis (MS) and its potential cause, chronic cerebrospinal venous insufficiency (CCSVI), in support of a request by the Multiple Sclerosis Society of Canada.

The MS Society has already committed to funding CCSVI research and now we are calling on the Government of Canada to do its part.

Canada has one of the highest rates of MS in the world, with between 55,000 and 75,000 Canadians living with the disease. MS is a devastating, unpredictable disease, which affects balance, hearing, memory, mobility and vision. Its effects are physical, emotional and financial – and they last a lifetime. MS steals futures from families, and there is no cure.

MS has been largely recognized as an autoimmune disease. However, in 2009, researchers put forward the hypothesis that MS may, in fact, be caused by CCSVI, which is a narrowing of the veins in the chest, neck and spine that does not allow for the efficient removal of blood from the brain. As a result, blood leaks into the brain, it is thought, depositing iron, which triggers an immune response.

A procedure known as ‘liberation’ opens up those narrowed veins. MS patients who have had this procedure report an improvement in ‘brain fuzziness’ and circulation, and, over time, a marked improvement in the quality of life.

We appreciate that there has been both controversy and interest regarding the CCSVI hypothesis and the liberation procedure, and that numerous questions remain. However, the International uni0n of Phlebology, the largest international organization devoted to the investigation and management of venous disorders, has gone so far as to create guidelines to diagnose and treat vein malformations like CCSVI.

CCSVI Medical research and liberation treatment centres are popping up daily. A few weeks ago, Kuwait became the first country in the world to offer the liberation procedure to all its MS patients who have blocked veins in their necks.

We believe Canada should be on board. In addition to funding research in CCSVI, we are also requesting that you convene a meeting of the provinces and territories to discuss the CCSVI hypothesis and the liberation procedure, as these issues are urgent to MS patients and their families, for which all Health Ministers are responsible, including patients in direct Federal responsibility.

We also ask that individuals living with MS be imaged for venous malformations, and treated if required – just as a heart patient would be treated for a blocked artery.

Should imaging and treatment be offered, researchers would then have a large population to explore the possible link between CCSVI and MS, whether the liberation procedure improves quality of life and halts or stops disease progression, and numerous other research questions.

Canada is recognized the world over for its publicly-funded medical system, and we must protect accessibility and universality. Canadian MS patients should not be struggling alone to determine what is a reputable imaging or treatment centre.

But in the absence of help, they are forced to find their own way, leaving many seeking help to go overseas for private healthcare. What does this mean for a family who simply does not have the financial resources to do so?

Advances in treating diseases come only through clinical trials. Using cancer as an example, while only one percent of patients may be enrolled in a study, the remaining 99 per cent are not denied treatment. Why is MS being treated differently by our celebrated medical system?

This is a matter of utmost urgency. Many MS patients are experiencing a rapid decline in their health. We believe there is a moral obligation to offer all MS patients the imaging necessary to identify a venous malformation and access to the treatment that could possibly stop the progression of their disease in its tracks.

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Real hope - that is, for immediate CCSVI testing and treatment in Canada - not only further research.

I thank God these two wonderful people (Dr. Duncan and Dr. Bennett) recognize the urgency in MSers having this condition tested for and treated before our health deteriorates further...and are appealing for such on our behalf!!!!

happy liberation everybody. it won't be long now. i know i said don't trust the MS society but i'm in a better mood now. along with the news about genetic corroboration, i feel we have together taken a huge step today. so in honour of all those who have lost their lives to MS, and all those who have fought this good fight with us, i say we will never forget you, and we will always have in common that we saw this day. thank you all from the bottom of my heart, from deep in my soul, where my dreams have been sleeping all these years.

especially need to recognize 2 individuals who have worked tirelessly, as much so as anyone has seen an SPMS CCSVI victim work: They are behind MSLiberation.ca -- Rebecca C. and Andrew K. They have led the humble members of an exercise group all this way, and helped all CCSVI victims change history.

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